Ever is the smiley-est baby we have ever met! Even his oncology team agrees. He has a single tooth he likes to show off with the largest grin on any occasion he gets!
Ever started having unequal pupils and a droopy eyelid. An MRI, ordered by the ophthalmologist, found a large abdominal tumor that was secreting antibodies and attacking the nerves of his eye. We met with the oncology team and followed the tumor for a couple of months with ultrasounds, but it grew rapidly. Ever had open abdominal surgery to remove the tumor. He had severe intraabdominal bleeding from the tumor and was admitted to the PICU. Although the surgery was hoped to be curative, in March we found progressive cancer in his abdomen again and we started chemo.
The chemo tires him out and makes him nauseous, but he is still doing everything a 9-month-old should! He grins and laughs at everything, wants to eat anything he can get his hands-on, and is trying to learn to crawl to chase his sister and the dog. He also has lost most of his hair, but keeping a little peach fuzz right on top!
We have struggled financially due to the high cost of treatment and being on a single pediatric resident salary. I (his dad) am a pediatric emergency medicine fellow so know both the medical side and the family side and it has been challenging and at times traumatic to work in the same hospital Ever gets his treatments. Our 5-year-old (and both parents) have also struggled with how to manage our worries for our little guy!
In the Fall of 2019, Atlas began exhibiting a variety of symptoms and his behavior also seemed off. Nothing seemed to make sense or point to anything specific. It did not help that we were entering the onset of COVID-19 when doctors were using telemedicine more and more. He had random fevers. He cried in pain and discomfort but could not localize it. We noticed little pinprick markings on his body. He was generally lethargic. We could never reach a satisfactory explanation with his pediatrician.
We could not deny that his coloring was off and he seemed to bruise easily. He eventually stopped eating and his belly seemed swollen and solid. His pediatrician advised us to observe him for a while longer but we knew as his parents that something was just not right. His loving teachers at daycare agreed and with that, we took him to an urgent care annex of Dell Children’s thinking he was severely constipated. The physician on staff heard me talk through symptoms and noted his pallor and bruising. She ran a blood panel and we immediately knew his blood counts were ‘not right’. From there, we were transported to Dell Children’s Main where we received his leukemia diagnosis.
The initial days of his treatment were shocking and traumatic but the amazing staff at Dell Children’s Hospital and the community around us lifted us up. It made us thankful for the support that surrounds us. You never realize how much love is around you until something like this happens.
It also made us realize how precious life is. We can fill our lives with such unnecessary ‘busyness’ and suddenly we take the important things for granted. In an instant, a cancer diagnosis laser focuses your family on what matters most.
Certainly, our routine is different these days with our regular clinic visits and tending to Atlas’s needs but it’s a challenge we happily accept because, ultimately, it’s his journey back to health. The important thing is that we are living more in the moment while appreciating each other and the wonderful world around us.
He takes on his treatments with bravery and even empathy for those around him. When nurses are administering necessary but oftentimes, uncomfortable procedures, he manages ‘thank-yous’ through his tears. When other children are upset, it distresses him and he won’t rest until he knows they are OK.
